Last week I ended up in the ER following a severe headache which led to right sided numbness that started on my face, moved down my arm and leg and my torso as well. My husband feared another stroke but I was relatively calm. My vision was worse and my tremors also increased (my lingering deficits from my AVM rupture last year). In the ER they did an extremely thorough Contrast and non-contrast MRI with my standard tumor protocol as well as a stroke protocol. Fortunately no new abnormalities were discovered so I was cleared to go home. After follow up with my neurologist, they suspect sensory seizures. Now that this is identified, I realized many other episodes I’ve experienced this past year have likely been these sensory seizures as well.
I wanted to reach out to see if anyone has these as a lingering effect from their AVM and/or rupture, and if so, what treatment plan are you on?
My neurologist wants to avoid putting me on seizures meds which I am grateful for, but I’m wondering if there are any other treatment options.
Please chime in!
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Lady Gray, Dancermom sent a great way to understand Simple Seizures. Though I'm on an anti-seizure med, I have them every 3 to 6 months. Your neurologist is wonderful, if you can stay away from having to take a seizure med, that's great.
I am not sure if this will be helpful but what you are experiencing is what I do experience. I have been diagnosed with simple partial seizures and I have been on medication since December of 2014 and we actually just increased the dose due to break through seizures. I have been told that simple partial seizures can be difficult to control. The reason why I am being treated by medication is to prevent a full blown seizure from occurring and seconds with treating my headaches as well.
In the past before my diagnoses of an AVM then before my treatment for AVm and then after treatment, I would get headaches which I would consider a migraine. With these "migraines" my seizure would first start with a sensation of heaviness in the brow area, it would follow down the side of my face with the feeling of heaviness continuing down to my arm and my leg. I would then start getting these uncontrollable tremors in my right arm, hand, leg and foot. These would eventually pass.
Currently, what I experience is the sensations of the heaviness in the face, arm and leg as I had in the past with out the severity of tremors. Prior to restarting my treatment for seizures in December (I had been on anti-seizure meds in the past) I had been getting the sensations more frequently (almost on a daily bases) as well as exhaustion and fatigue, difficulty with memory, as well as word retrieval and knowing what I wanted to say but not being able to say it. My tongue often felt thick and was unable to form the words.
Everyone experience is different and every neurologist has their preferred treatment plan. I do hope that you receive the answers and guidance you are looking for.
Thanks for your response. I am hoping to avoid the meds but the recovery is exhausting after each episode. I don’t know if they do long term damage. I’m hoping not. My neurologist’s approach is less invasive than most which I appreciate, but he is retiring and I am transferring to a new vascular neurologist in January. I am hoping she has a similar philosophy.
I’ve had the exhaustion and fatigue post seizure and working memory issues as well with word recall issues like you are describing. I had an insanely accurate memory before this, it was my “superpower” as my husband used to refer to it, but now, notsomuch. Frustrating for sure, but super grateful that I am as intact as I am after my rupture/hemorrhage.
I’m happy to finally have an answer about what is causing these episodes, but alarmed by it being seizures. On the other hand, I haven’t yet met anyone in Seattle that had an AVM rupture that isn’t on seizure medication. I seem to be the only one. My EEG and sleep study have come up clear so far. I’m going to start tracking these episodes more consistently and see if there are any patterns.
Thanks for sharing your experience.